Bruno Bettelheim is
still with us and dictating what we think and do about
autism. We know he was a compelling and
effective charlatan, but are we aware that he's still
calling the shots? Bettelheim's worst and most
enduring crime was to create an extreme: to push
the pendulum up so high on one side that after its
release it swung with a vengeance to the opposite
extreme and stuck there. We have progressed from
the "Refrigerator Mother" to the "Autistic Person as
Poltergeist". Once accused by Bettelheim of
being the cause of autism, parents are now seen
as its heroic and tragic victims. Taking
advantage of the leeway society accords to heroes and
martyrs-to-a-cause, they have rejected accountability
to autistics, and they have taken control of the
research and public agendas.

A catastrophic view
of autism means that any scrutiny of the parents'
claims is not only unlikely, it is assumed to be
reprehensible. This view of autistics, as
ungovernable forces invading and ruining the lives of
innocent families, serves the needs of the parents and
the entire autism industry, or circus (as an autistic
friend puts it). The result is that autistics
are segregated. With the happy and proud
collaboration of governments, courts, researchers,
service providers, and funding bodies, parents have
succeeded in removing autistics from the vicinity of
any important discussions or decisions.

"Do they think we're
stupid?" I asked my friend. "Or are they
scared of us?"

"Both," he said.

In recent committee
hearings in the Canadian Senate, a man called David,
who refused to give his last name, was invited to
speak. He said: "I appreciate this
opportunity to speak on behalf of Canadian people with
autism". David is not autistic. He has an
autistic son called Adam, and is a big deal in the
"autism community" of autism societies and pressure
groups and volunteer-martyrs. David, in this
hearing, is so emotionally compelling, so brave and
beaten-down, that nobody notices he has horribly
mistreated his son and is now defaming him.
David describes Adam, who like many autistics suffers
from exceptional academic achievement, forcing the
cancellation of David's "international business
trip" by yelling at his parents, "Why don't you kill
me? Why don't you kill me?" In the
highlight of David's testimony, we see that Adam is
merely perceiving reality accurately. David
says, "Autism is worse than cancer in many ways,
because the person with autism has a normal
lifespan." To improve the situation, David is
saying, we need to make autism fatal. Then it
will only be as bad as cancer.

David's slandering
of his son, his incompetent-bordering-on-ignorant
testimony about autism and its treatments, and his
denigration of all autistics, were effusively praised
by the Senators ("moving", "touching") and will be
included in their final report. Autistics will
not be. The world is full of Davids, avidly
being listened to, being consulted with.

In the UK, a public
health crisis is laid at the feet of Andrew Wakefield
and colleagues, and at the doorstep of The
Lancet. There is hand-wringing over the
consequences of publishing a questionable article
associating autism with MMR vaccination: the
British public panicked and the vaccination rate
plummeted. Britain now has a measles problem and
the spectre of resurgence looms. But scientific
irresponsibility, however real, did not cause this
public health nightmare. Parents who prefer the
possibility of a dead child with measles to a live
child with autism did.

Researchers are
pitching right in and getting grants. In Quebec,
where an autism society president declares that
measles never killed anyone, a lot of money is being
thrown at a study to ascertain whether kids are still
getting the MMR vaccination. Next door in
Ontario, parents associate vaccines preserved with
mercury--not the mercury-free MMR--with the autism
"epidemic" plaguing their children. Since
mercury was largely removed from Canadian vaccines in
1997, parents insisting on this association are
working hard indeed. But parents of autistics
are known to be persistent, and when it comes to
finding causes and cures, they are insatiable.
Denying that this gigantic appetite has not shaped,
skewed, and biased decisions in autism research and
treatment is to deny reality.

And I don't hear any
researchers objecting: they enjoy the largesse
of the industry/circus, the status of soldiers ranged
against the enemy, and the same protection from real
scrutiny bestowed on the parents. They gallop
into court, the behavioural analysts do, to give the
scientific stamp of approval to their treatment of
"autism", which they themselves consider to be a
social construct. Or a psychiatric construct, or
a "hilarious
accident"/misleading-hypothesis-which-should-be-rejected:
except they don't use these words in court. They
gallop into the lab, the cognitive scientists do, to
use fMRI to establish that autistics are unable to
ascribe mental states to triangles. They are also
finding out about how autistics look at images of
human faces. Nobody has figured out whether
autistics look at images differently than at reality
because nobody has thought of asking. And if
indeed we do process faces as objects, how possibly
can we pick out faces from all other objects and
entities and avoid them? Where is the
neurological process to justify this, or do we think,
as we endure consequences, invisibly? And if
visual face recognition is the key to autism, why is
the President of the Canadian National Institute for
the Blind a blind man rather than the tormented parent
of a blind child? And why aren't blind people
subjected to 40 hours of ABA a week to teach them eye
contact, appropriate gaze, how to point, joint
attention, and so on?

They gallop away
from their duty, the epidemiologists do, retreating
from their responsibility to instruct the rest of the
autism industry/circus--as well as the public, and
governments--that the only autism epidemic justified
by evidence is the recent upsurge in the number of
papers published about autism in peer-reviewed
journals.

They gallop into the
public arena, the experts do---to great applause from
the parents---bearing treatments and methods in danger
of exhausting available acronyms: ABA, IBI, AVB,
PRT, DTT, NET, RPM, DIR, SCERTS, etc.

Someone should
notice that no one knows what autism is, and that the
major questions that ethically should take priority
are missing from the agenda just like autistics
are. For example, we don't know the nature of
mental retardation, or for that matter intelligence,
in autism; and we have no clue about the extent
to which odd autistic behaviours are entangled with
exceptional autistic abilities. Ethics are not
high up on the list when a scourge worse than cancer
is being wrestled with.

It seems to me that
we don't need to exorcise the Poltergeist. I
have not discussed the consequences of a world lacking
in both autistic genetics and behaviours, but maybe
someone should. We need to exorcise the ghost of
Bettelheim, get the pendulum unstuck, and force
accountability on parents and the whole autism
circus. The people who can accomplish this are
autistics, but our only role in this circus is as
fodder for the performers. I don't know if there
are degrees of ostracism, but we are as ostracized as
ostracized gets.

"What's the worst
thing about being autistic?" I was once asked,
as to a child, by an ingratiating health-care
professional.